Links

Thursday, November 15, 2012

Is This Normal?

Laurie Clements LambethAt a recent MS clinic appointment, I listed my cognitive
lapses over the past year. I have mild
cognitive impairment; I was tested after twenty-five years with MS and a few
suspicions that I wasn’t quite up to my old speed of thought. Normal enough to others, but not me. Dividing
my attention, shifting focus, and finding words have steadily grown difficult. But
these three events were different: sudden, strange, like the seizure I had nearly
twenty years ago: misfires, blips, spikes on some tiny chart kept by little
scientists in my brain wearing white lab coats and horn-rimmed glasses. The
charts ribbon out of their little machines, and when a blip occurs, the
scientists rip them from the machines and conceal them in their lab coat
pockets.

So I asked the Physician’s Assistant the question we all ask
at some point: “Is this normal?”

Supermarket Blip

My husband was somewhere behind me, off getting milk while I
ducked the supermarket scooter into a quiet aisle. He approached and said,
“Chobani’s on offer.”

“Chobani?” I said.

“You know, Chobani.”

“What . . . is . . .
chobani?” I asked slowly. His face went from quizzical to startled. I play
little practical jokes sometimes, and he thought this was one of them. The
startled expression came when he realized I was far from joking. I was
confused.

“You really don’t remember what Chobani is?” he said.

“No.” I panicked. “Is it bread?” I thought of another word
that begins with a ch- sound, but couldn’t place it. Ciabatta.

Two years before, I had come home from a trip to a Maryland writer’s
retreat telling him all about the Chobani Greek yogurt I had for breakfast
while I was there. So you can imagine his surprise that I did not
recognize the name. I wanted to shrink
into myself. How strange it felt, as though a shell of silence had formed
around me and nobody could come in or let me out.

I was scheduled for a hair cut and color at 1:00 pm. It
takes me half an hour to forty-five minutes to drive to the salon. I was aware
of these things. At 11:45 I was answering email and remembered feeling as
though I had plenty of time. I’ll just
finish this up, I thought. I took a shower. Then it was 12:20. I grabbed a
book, dressed, did my makeup. I took my time. Then I glanced at the clock. How
did it become 1:09?

There was no way I could make it. I was beyond late. Perplexed. At 12:15 I should have been thinking of
leaving. At 11:45 I should have realized I was running late, but somehow didn’t.

I couldn’t tie it together. Imagine two strands of yarn. One is the hours
ticking by, time itself, and at 1:00 I had my appointment. Let’s put an
imaginary pin down and call it 1:00. The other strand of yarn represents the
amount of time needed to prepare and drive to 1:00. The problem is, in my head
the two strands of yarn were very far apart, and parallel. I could not connect them. They were loose and
felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a
small object.

Parking Blip

At the vet’s office there’s a steep little hill you need to
accelerate to climb, so I drove up as usual. At the top I eased the brake. The
car sped up. Why aren’t we stopping,
I thought. Something’s wrong with the car.
I pressed harder. We headed faster toward the building. Just as I reached for
the emergency brake I saw my foot firmly pressing the gas pedal, not the brake.
I lifted my foot and slammed on the brake just in time.

It took me two days to tell anyone. No structural harm, but
I was shaken, ashamed, confused.

When I asked the MS clinic PA if having cognitive blips is
“normal,” she paused a moment.

“It’s—common,” she said, her voice measured and lifting.

And I was grateful: more common than normal, strange but
shared.

Laurie Clements Lambeth’s MS diagnosis at the age of
seventeen brought her to poetry.Her
first book Veil and Burn (University
of Illinois Press, 2008) was selected for the 2006 National Poetry Series.
Currently at work on her second poetry collection and a book of creative
nonfiction about MS, she also teaches in the Medicine and Society program at
the University of Houston, where she earned MFA and PhD degrees in Creative
Writing. To learn more about her work, please visit www.laurieclementslambeth.com.

You know, the more things like this I hear about Copaxone makes it that much easier to push that button every night. I've only been on it 3 months and waiting to see the effects. Thank you for sharing.

I had a relapse 2 months after starting Copaxone and immediately questioned whether it was working (and worth it). Only then did my neurologist tell me one really had to take the medicine for about 6 months before noticing positive effects. So, I stuck with it. In 9 1/2 years, I've only had 4 relapses and mild fatigue (and that's usually when I've allowed myself to let stress get the better of me). Best of luck to you!

I was diagnosed in 2006. I started out on Betaceron (sp), I was told the flu-like symptoms would take a few months to pass.......they did not. I then moved to Copaxone. I immediately had injection site reactions and steadily felt as if I had been hit by a truck after being dragged behind another. I told my Dr. how I was feeling and he said It was probably just my MS and to keep taking the Copaxone. At some point, and I can't recall when (another issue I have a lot), I had to stop taking the Med for a short period of time. I started feeling more like myself and the extreme fatigue went away. After a while I resumed taking my injections and again, I started the decline into the pit we know as fatigue.

After consulting with my Dr., AGAIN, he reassured me that Copaxone does not have these kinds of side effects that it must be something else. After a battery of tests, he found nothing wrong.

I took it upon myself to discontinue the meds and I felt like a whole different person. Like there was nothing wrong with me it seemed like the MS weren't even an issue. I had been that way for quite a while. Med free!

Now, 3 years later I have noticed a decline in not only my energy level but also my cognition. I forget things my wife asks me to do and things I have decided I want/need to do. My wife gets irritated when I forget the things she asks. And I get it, I really do. It's just so hard to use that as an excuse as to why I didn't do it.

I spend a lot of time in bed sleeping. I get 7-8 hours of sleep a night and after everyone has gone, I go back to bed and sleep another 2-3 hours. My legs feel as if I have run a marathon all the time (I'm only guessing here because I have never actually run a marathon) Everything I used to enjoy doing is now a battle for me. Staying awake long enough to enjoy some family time is hard to do. I have tried the drugs for fatigue but the side effects are worse sometimes than the fatigue itself. So I deal with life as it is thrown at me.

I only hope that one day if a cure is still hasn't been found, at least something can be done for the fatigue "I" feel.

that med put me in the hospital for 4 days 11 shots in i was having disy spells jerks tired would call and ask them if it was normal they kept saying it was my ms wen my blood pressure dropped to 85 they amitted me but before that i kept fainting turned out everything i was doing was a side effect to copaxene but they didnt want me off it so they blamed my ms have been off it and on avonex doing so much better they dont want u to stop there med becuase they get 6thousand a moth from the insurance its sad

It's like I can actually see the space where the word I'm looking for lives in my brain, and there is an opaque force field around it I'm pressing at. Once I finally get it, the force field disappears and it's just a word. No triumph, no pride, just revealed and still frustrated and blank feeling. Thanks for helping me feel less crazy. Common is not normal, but it is less lonely.

I really like the image you crafted of the opaque force field. Sorry it leaves you blank feeling, though. One good thing that has come out of the non-blip cognitive stuff for me, like forgetting words in the middle of a sentence, is that those images, those work-around phrases, can sometimes be more beautiful than the original word would have been.

I'm a writer and I find losing words when I speak, worrying. I haven't had that problem when I'm writing though, just speaking. I find that somewhat reassuring, If I lost words when I write, that would really hurt...

Your two strands of yarn analogy is great. I've had this same experience many times. I couldn't understand how I could both know and not know something about my schedule at the same time. I've often scheduled two things at the same time, because even as I know that I have something scheduled during a given time that I'm planning for, I don't know that there's anything scheduled during that time. Weird glitches...

Your two strands of yarn analogy is great. I've had this same experience many times. I couldn't understand how I could both know and not know something about my schedule at the same time. I've often scheduled two things at the same time, because even as I know that I have something scheduled during a given time that I'm planning for, I don't know that there's anything scheduled during that time. Weird glitches...

It is so comforting to my soul to read that someone else has the almost identical patterns and "blips". Not so comforting is the fact that we have to face these challenges but to know that we are not alone and that we are not "crazy". To forget a word or even a sentence, to not feel our feet or hands when we are driving or eating. To have such fatigue that we cannot even move an inch.........oh the bothersome path this M.S. beast follows. The ability to focus on others by providing a little touch of cheer and positive feedback, will in turn help us to have a more positive attitude. Thank you Laurie Clements for your "blog" post.

Thanks for posting this. I have been struggling greatly with this myself. I was diagnosed myself 1.5 years ago at 41. I've been shocked at how fast my cognition issues have happened. From an energetic, successful, self-employed businessman, to now.....

I have lots of troubles with going to the grocery store myself. So many inputs, I cannot make much sense of it. If I do go, my list has to be short and items that I am comfortable I know where they are. Sometimes I get confused, and scared (which is completely silly in reality). I will go look at magazines to calm down.

I have been a season ticket holder to my college's football team for 15 years. It is one of my joys bringing my young kids to the game. Spending time with them. This season I'm realizing I may not be able to do this much anymore. I go to the games, and watch, though I can't really recall much of what happened. Friends ask - did you see "that" play? I cannot remember. Usually it's just a blur. I know who won, but not much else. How do 3 hours go by without me realizing? Again, too many inputs.

I also have difficulty with driving directions. I'm fine when focussed on the area around me while driving (I'm safely driving), however, when I try to connect the dots from where I am now, to where I need to go, I just can't do it. I often drive the same roads to avoid confusion, and when things get too confusing to program the address in my iPhone for turn-by-turn directions. This also gives me some comfort to just follow the directions as they come, not trying to have the complete puzzle solved. Eventually I'll get where I need to go.

This is also the most difficult for family and friends to understand. Why all of a sudden am I changed? I look the same on the outside!

I have asked my doctor this as well, getting a similar answer "it's common", but no real solution or help. My MRIs are unchanged, so the disease is not progressing (on Avonex). However, the side effects of the disease are increasing.

I am pretty much in the same boat as for professional career, progression of disease, Avonex, unchanged MRI with increasing side effects. I find it a little scary when I hear "it's common" but nothing follows as to help the process. So if it's common, what can I do about it? But then I just forget...like I said, it's scary.

LaVidaMS - yes, I'm with you. It's like these things are happening in your head, and it's almost impossible to explain to explain to others. In the end it feels very lonely. You have this battle going on that no one can help with. Fiercely fighting to do things that make you happy, but scared, wondering how bad it will get...

Thankfully I've worked from home the last 10 years. So, I can minimize my interactions & stresses, and still be able to work somewhat effectively. Though at times it feels like my home office is a bit of a prison cell.

Thank you for your candor, Rob. MRIs aren't the only indicator of what's going on with your MS; I've had an "unchanged" MRI during an exacerbation, when I needed help getting on and off the table. Your story, your experience, counts, and should weigh in your neurologist's mind at least equally with the imaging.

There are medications that can help your thinking and focus day-to-day, like nuvigil, provigil, amantadine, and some of the ADD meds. I hope you find ways to let people know what it's like in your brain. It's hard. Harder, I think, than explaining numbness or weakness, probably because it's assumed we have conscious control of our minds.

I had my first baby 21 months ago and shortly after had a TON of MS episodes for months. I've had MS for eleven years this Christmas, never had such horrible cognition problems till after the baby. Perfect timing! Half my kitchen table was post-its and one of my counter tops, just loaded! Things like, make ice cubes, water vegetables, shower, ect. Stuff that i have never needed a note for in the past. Was driving home from the pharmacy and i was only a few blocks from my house but completely lost! Scared to death to bplease left alone! Host of other problems too. I'm 21 weeks pregnant right now and terrified what will happen to me after this baby is born at the end of March. Last baby was five weeks early and in the NICU for eight days. I had very serious postpartum depression for almost a year after first baby.

I used to say that half my brain washed away with the placenta. My MS symptoms didn't start until after my son was born. I wasn't diagnosed until my son was 20 months old, so I can't say how much before that time was attributed to MS and how much was just postpartum stuff that happens to most women who are sleep-deprived and suddenly find themselves nearly solely and entirely responsible for the survival of another human being. Motherhood hit me far harder than MS, and I have to say, the negative cognitive effects of motherhood resolved some as my son became older and more self-reliant (he's now 11) and I was able to sleep more. Easier said than done but really TRY not to stress about your situation as stress only makes it worse.

I agree with Laura. Having a baby messes with your thinking as much as anything. Motherhood is very taxing! And of course the MS has its own not so helpful additions. Throw in postpartum and you've got chaos. Been there myself for sure! I try very hard to minimize my stress. Take care. Prayers are with you! And congrats on the baby coming!

I have the same problems--memory loss, not being able to complete the "puzzle", missing words, time loss, and more. I feel sometimes like I'm losing myself, and to be completely honest I'd rather lose the use of my legs than my mind. It's comforting to know that I'm not alone in these worries.

I was trying to ask my kids to take a spoon from me one evening after dinner. I was holding it in front of me with a bit of a perplexed look on my face. I looked at my youngest and said, "I'm thinking pencil, but I know that's not right". She giggled a little and said, "How about spoon Mom?" It's a frustrating moment when I know I am saying something incorrectly, but for the life of me I can't correct myself. I feel like some days I've had a stroke.

I know that feeling all too well, Kristin. I was bedridden from fatigue when my youngest daughter asked me how to fix macaroni and cheese. I could not think so I decided to tell her step by step. She came back to me after 10 minutes and said, "The oil is boiling, now what?" Yes, I had told her to boil 3 cups of oil instead of water! She now reads directions on packages instead of coming to her mother.

I am a pediatric LPN and I love my job. My issue here is trying to sound confident in my job but then I go into a room where I am about to give a vaccination to a child that is already scared and I am stumbling over my words. I can only imagine what the parents of these already scared children. I always stop at the closed door and take a deep breath and give myself a pep talk. But it doesn't always work. It is a very real scare. Also the checking of the correct vaccinations. I at times think that I should not be in this profession.

Wow, thank you! I am not alone. I experience your time thing and I have a lot of trouble with words some days and some they just roll off the tongue. My biggest issues is parking, I can never find my car. I don't remember what door I entered the store through of where I parked. I drive sometimes and while I know that I know where I am, I have no idea where that is or how I get where I'm going. I have to plan more time to travel for turning around, but then add the time string issue, and well I'm late a lot.

I was having some confusion driving to houses I'd been to before to play mahjonng, so I took a big gamble and bought a gps. I didn't contribute this confusion to my MS, I've had 5 years, am 58, exersize veryday etc etc. So hearing about his issue is kind of scary, but also good to know I'm not alone, thank you!

This to is a reflextion of myself in many ways. This is comforting to know you are not alone. 2 years my congnotive thinking was bad. I was going to PT 3x wk. I'd never go the same way or would forget were I was going. Quit my job as a recruiter 8 years ago because my brain just stop remembering the computer programs I would work from. I'd tell the Doc. somethings not clicking in the right side of my brain it was as though I could feel it. For the past 6yrs. my mother also with MS for 28 years was living with me until she resently past 1 1/2 months ago. I have lived with this in my life for 28 years. Now at the age of 46 my life is in a new direction. Bad enough I feel lost in the brain at times, not so much anymore but were does my life go from here now living with it myself. I immediatly turned to the MS Society for help I just didn't know what to do with myself so started stuffing envelopes (very Humbling)but I got out. With my mothers passing there were ofter issues that would accure with her health and I would have to advocate for her. I feel I did this well so I have joined the Goverment Advocacy for MS in my state. SCARED but see how my brain works doing this. If it doesn't work out or need help at least I'm with people who understand and I will still be able to laugh at the stupid stuff I sometimes do. My mom smiled all the time no matter how bad things were. I want to be like her! I want to carry this though with dignity and SMILE just like she did.

I don't understand the so-called parking blip, lots of people hit the wrong pedal, that's not an MS thing. I don't understand the time thing as well, many times I'll get distracted and time passes, that happens to everyone. The speech thing I definitely do understand, because that happens to me. I have not forgotten what things were, but I mix up words. Bandaid for banana, Spanish for spinach, table for chair, door for window, sometimes the beginnings of the words are similar, sometimes the words themselves are similar in use. I was sent to a specialist and was told my issues were normal aging, and not MS-related. I do disagree with them, I think it's MS-related.

RachieD--I guess the main difference between these and other constant cognitive changes (like forgetting a word here or there) is that they were completely not what is my normal. So the parking blip was disconcerting because nothing like that had ever happened to me before. Similarly with time. It was confusing past distraction. It was a cognitive disconnect, a misfiring in my brain, and very difficult to convey to other people who said it happened to people all the time, or that they have lateness issues too. I hope these particular blips never happen to you. After 26 years with MS, they're new to me.

I have cognitive issues as well but at times am grateful. It sort of protects me from reality...my dear husband of 29 years died suddenly of a heart attack last November, 10 months after my diagnosis of MS at the age of 49 I keep lists and calendars to keep things straight. I have wonderful grown kids and friends who are a great support team but feel so alone as my partner in life is gone. He took great care of me through diagnosis, hospitalization, and convalecense. I pray for no relapses as I do not think my companions (2Boston Terriers and a Bishon) would be much help. I miss someone to help me with treatment decisions. so when I wake up and can't remember what month it is or what day it is...it does come back to me after a moment and I begin my day stiff and numb... Life with MS

Thank you for bringing this up!! I was diagnosed 8-2011.I feel my mental acuity was deteriorating. My vocabulary has dropped drastically. I only see the nurse pracitoner at the neurologist office. She says that this has nothing to do with my MS.

I forget things quite often, I know what I want to say and get frustrated because I cant say the words. I sat an assessment at college the other day got to question 16 out of 20 and that was me finished, I still had the best part of half an hour to go but wild horses could not pull the information out from the dark recesses of my brain.

Dear Laurie, I can tell you are a writer. One of my best friends was an old lady who spent her last 2-3 years in bed in a nursing home with only one leg (diabetes) I called her for 2 years before we actually met. (I call shut-ins for my church) She had out-lived four husbands and had such an interesting life. She used to play in the symphony and has written probably hundreds of wonderful songs. I used to visit her in the nursing home after leaving my writing class and would share our stories with her.I would share stories about her with my class as well. She would teach me her songs and we would just sing & sing! I really do miss her. I'd write poems for her all the time. Finally after many poems- she said, "Pam, you have no rhythem!" It was true but I was always writing them; I was awful. But because she was a musician she could write poems so beautifully so I admire poets and writers- I'm strictly an amateur. When I can't think of a word I almost always think of the FIRST LETTER of that word. So people often help me. But when I type I can think more clearly because it makes me be more methodical and to slow down.Thank you for sharing. There are many of us who can relate.PS: When my friend passed away I felt honored to read a short story and a (non-rhyming) poem at her grave side.

I appreciated reading about your struggles with 'the fog'. I find that with my RRMS it's a constant struggle to remember the things I clearly should remember, things I probably had just talked about but all of a sudden those things have escaped my brain.It's funny (not really), I study my resume daily just so that when I get a call for an interview, I'll be ready; it's my life so you think I'd remember, but it's not that simple, nothing ever wants to be retained in the brain. I've given an example of this to my neurologist: "I've just graduated from college with honours and I feel like I should know it all, yet when I arrive at an interview, all the new information in my brain hides away deep within." I sort of think my brain's like a book and the information within all sort of digs itself deep within the binding and so when I need that info, I can't find it when I most need it. Now, I studied medical administration, and that valuable info hiding away is of no use to me in an interview, much less in the job if I can't retrieve it when needed. This stresses me out greatly and squashes my measely confidence everday, to the point where I have stopped looking for work period.To end it off, I'd just like to say that I really hate MS...that is all :)

I am finding the cognitive issues the hardest to deal with. I've always had a thirst for knowledge ever since I was a child. I would learn all I could about as much as possible. My family always called me encyclopedia Cindy or say "go ask the walking dictionary". Now my vocabulary has been reduce to ",thingies, whatchamacallits and doodads". I can't remember appt. even when I write them down. Everyone tells me to put it on my phone but you have to be "smarter" than the phone to use it. This has become a joke because if I don't laugh about it I would cry. I've been told by my doctors it just stress because my MRI's are also unchanged. The only way to get rid of the stress it to move to a deserted island. I still learn as much as possible and really try hard to learn something new each day. I may not always remember it but I'm not giving up.

i quit smoking April 18, 2012 i got diagnosed June 8, 2012 and thought what luck. i turned to my wife and told her this is why i do not go to doctors. i states my rebif and just recently was switched to abogio. insurance company says ms is not a qualifying factor for any kind of walking assistance. through all the bad luck and my two relapses i will kick this in its ass and be free from it one day. i am a police officer and have been for 18 years. i am blessed by God and i am able to retire in 40 days at 43 years old. i have the love of my disabled wife for the last 21 years and look forward to racing her on scooters at was mart. i have has two relapse since my diagnosis. after reading some of these blogs i realize that i am blessed and when i am at the range and forget the round of fire or shake so much i don't fire i will remember all of these blogs and think that i am blessed and could be in a much worser boat. my prayers go out to all that are cured with this and i really pray that a cure is developed and all that have this disease will be given the cure, not just the rich or privileged.

i quit smoking April 18, 2012 i got diagnosed June 8, 2012 and thought what luck. i turned to my wife and told her this is why i do not go to doctors. i states my rebif and just recently was switched to abogio. insurance company says ms is not a qualifying factor for any kind of walking assistance. through all the bad luck and my two relapses i will kick this in its ass and be free from it one day. i am a police officer and have been for 18 years. i am blessed by God and i am able to retire in 40 days at 43 years old. i have the love of my disabled wife for the last 21 years and look forward to racing her on scooters at was mart. i have has two relapse since my diagnosis. after reading some of these blogs i realize that i am blessed and when i am at the range and forget the round of fire or shake so much i don't fire i will remember all of these blogs and think that i am blessed and could be in a much worser boat. my prayers go out to all that are cured with this and i really pray that a cure is developed and all that have this disease will be given the cure, not just the rich or privileged.

I've had this issue a lot and it really disturbs me. I can't remember what I did the day prior. I had to drop from college because of my memory issues. Nothing helps me. I need help. I don't know where to look for it.

Victor, Here are some things that might help you, if you haven't tried them already. If I were you, I would ask the neurologist for a referral to a neuropsychologist/ cognitive psychologist for cognitive testing. It's exhausting (3-5 hours), but then you will be able to understand more clearly what is happening in your thinking patterns. For instance, memory for me is far less of a problem than dealing with multiple strands of information, which I never would have realized on my own. Once you have the testing, you can present the results to your college's center for students with disabilities. They can make accommodations for your disability and give you forms to present to your professors. It took me a long time to realize the benefits of this. In some cases the accommodation may give you double time for tests, or it may allow you to test open-note, or have extensions for paper deadlines, or even have a note-taker to accompany you to class. So there's that. There are also exercises my neuropsychologist suggested to me, such as those on lumosity.com, or medications such as nuvigil, provigil, amantadine, and ADD medications to sharpen your focus and keep your mind awake. Some neurologists prescribe antidepressants to increase seratonin in the brain and get more neurons on the job to find the information you can't remember. Meditation can also help.

Big, heavy issues that accompany these possibilities can be wrestling with going public as a person with a cognitive disability, owning that, and knowing you can still be proud of your ideas, just not as strong as you once were at recall, for instance. It's hard, I know.

Also, taking fewer courses can help immensely, even if that ends up being one course per semester. It can cut down your fatigue level and also help you keep track of things. Of course taking good notes and perhaps using a recording device (or note-taker) can help you remember what happened in class, too. Good luck, and I hope you find ways to persevere in your education.

I'd laugh but I can't see thru my tears. Time blip - did "I" write that paragraph for you?? Think I have plenty of time and then running super late or too late! And it's beyond a normal losing track of time. "Normals" just don't get it.Forget small details too. Though occasionally I forget words, I play a lot of word games, so that is still okay. When I had insurance and saw a nuerologist, he brushed off my comments about problems with cognitive function, saying it wasn't part of MS. He said if it continued we'd do a sleep study for possible apnea. Then because it got worse, I was "kindly" ( ha ha ) laid off from work.

Follow by Email

About the Society

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.

Disclaimer

The National MS Society is proud to be a source of information about multiple sclerosis. The comments, advice and information provided by contributors to this blog do not necessarily reflect National MS Society views or recommendations, nor is the Society responsible for the content of any "off-site" Internet information referenced by or linked to from the National MS Society's Internet site. Refer to our Legal Notice for further details and please carefully research all shared opinions and advice through expert sources and consultation of your healthcare provider. The administrator reserves the right to remove any inappropriate comments (see Guidelines).